"Inside my head the internal dialogue accelerated to top gear: How selfish of us, you are no trouble at home. She needs to become more independent. How can we let you embark on this just because we want to have an overseas holiday? It’s time to let go; you deserve a break. What will happen if your medication for the hypothyroidism runs out? There will be proper supervision. But will it be proper supervision? Let go, let go, let God.
We loaded everything in the car, drove to South Dunedin. Together we arranged your room. A mosaic image: your face showing your concentration as you fold your clothes and put them in the drawers of the dressing table. You sort out your books on the wee table next to the bed and carefully hang your clothes in the wardrobe. You held on so tightly as we left. I said, ‘You and Janine will have to come for dinner soon.’
‘I’ll ring you, Mum.’
Driving home was a nightmare. I imagined you waking in the night, missing us and crying yourself to sleep. Visions of you burning yourself while you were cooking vied with ones of strange men coming into your flat and damaging you forever. What if there was a power cut? We had supplied you with a torch but would you know where to find it in your flat?
During this time I worried about what would happen when we wouldn’t be ‘on earth’ any more. What would happen to you? How would your needs be met? And then I thought of you as a toddler, sitting in your high chair, grinning while you were eating spinach and spilling it all over the chair and over yourself. I thought of you in our tiny house on Signal Hill Road, moving yourself around in the walker we’d bought. Friends said: ‘It’ll damage her legs when she uses the walker. She should only walk when she’s ready.’
But even then I realised that we had to help you and that you were strong, and that you would know when it was time to sit down in your little walker. You see, darling, we trusted you then and now we had to trust you too. We knew that this decision had to be made and that we had to let go of you to see how far you could stretch yourself."
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| Miriam at Lake Tekapo, March 1995. Photo by Janice Rowley |
And so tomorrow we'll go through it again, knowing that this time leaving home will be a permanent move. At the moment my Heart wants to follow its own beat of a mother letting her disabled child go while Reason tries very hard to come up with the right answers. The meaning of 'Right' in this case being translated as, Oh, yes, you are getting on, you can't keep this up, your husband is ill, you need time for yourself.
In 1995 many questions went on in my mind. Since then I've learnt that it is better to live the questions and not worry about the answers. And I've learnt to ask for grace, courage and strength.
Tomorrow we'll also say goodbye to Pauline, Miriam's personal carer for the last eight years. We will miss her dedicated support and her stories.
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| Miriam and Pauline |
I wrote the following poem after Miriam's stroke in 2001. I have changed the ending.
Leaving Home
I see my daughter lying asleep in her bed,
her life force reduced.
I remember her
as a woman who knew
determination:
going to town, taking a bus,
buying a Lotto ticket,
a cappuccino and a muffin
at the Muffin Bar.
One day she rang:
I’ve got fifteen books from the library,
I can keep them for three weeks.
Her hair spreads on her pink pillow,
her damaged hand lies still
on the lovingly made
wine-red handmade quilt.
Fingers gently spread,
the thumb apart,
the index finger slightly curved,
the same way she held her paintbrush.
Even in her sleep her presence
demands acknowledgement
of herself, her energy,
her understanding.
Tomorrow I'll have to let her go,
she'll sleep in a new bed
in a new place and her warm night-time smile
may be for someone else.
Huberta Hellendoorn
March 2013
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